Aa
Continuation of Long Term Sx's Post Tx Thread
I don't post much anymore, not that I posted an awful lot before. I do try to read the threads every few days. I'm delighted to hear that Dale is doing so much better. I was so worried about you. What does this have to do with long term sides? Nothing. Just wanted to throw that in there for Dale.
Most of the time I just want to stay away from anything related to HCV, but after being so much a part of my life for 48 weeks I have a hard time letting go completely.
These are the continuing sides I deal with 9 weeks post tx:
1. Muscle Cramps and Spasms (back)
2. Hip Joint aches - after sitting sometimes difficult to walk
3. Insomnia - since I'm off tx no more ambien
4. Thyroid problems
5. Anger (internalized)
Actually come to think of it this is the first time I've admitted that I'm angry.
As a result of the combo therapy I developed Sarcoidosis, currently in stage 2. I believe it should have been caught early on during tx and I should have been taken off tx. The lung disease would have had a better chance of going into remission on its own. Since it wasn't caught and spread to this stage it's unlikely to go into remission.
While I realize it's an extremely rare sx effect I'm still p*ssed off that I have to deal with it. I'm p*ssed off that if I do relapse I can't do the combo therapy again. What if they don't offer VX-950 alone? Or what if they do but not till 2010 or later?
So I try to forget that I have HCV and just live my life, but it's hard. Some days are harder than others and I guess this is one of them.
Most of the time I just want to stay away from anything related to HCV, but after being so much a part of my life for 48 weeks I have a hard time letting go completely.
These are the continuing sides I deal with 9 weeks post tx:
1. Muscle Cramps and Spasms (back)
2. Hip Joint aches - after sitting sometimes difficult to walk
3. Insomnia - since I'm off tx no more ambien
4. Thyroid problems
5. Anger (internalized)
Actually come to think of it this is the first time I've admitted that I'm angry.
As a result of the combo therapy I developed Sarcoidosis, currently in stage 2. I believe it should have been caught early on during tx and I should have been taken off tx. The lung disease would have had a better chance of going into remission on its own. Since it wasn't caught and spread to this stage it's unlikely to go into remission.
While I realize it's an extremely rare sx effect I'm still p*ssed off that I have to deal with it. I'm p*ssed off that if I do relapse I can't do the combo therapy again. What if they don't offer VX-950 alone? Or what if they do but not till 2010 or later?
So I try to forget that I have HCV and just live my life, but it's hard. Some days are harder than others and I guess this is one of them.
Ina, don't count on me remembering all that for the next time, ok, I will write it down in my pad here so that I don't bug you again.
I hear you about the criteria needed to make the group separation, I think it should be done by the anemia effect on the person's body and not a chosen number or maybe a combo of both. Since the MCV changes at some point during tx in many of us, it makes you wonder if the deformity of cells gets resolved in all of us, or it might linger in some. Mine went high for months and did go down post tx, I kept reading the net to see how significant this was and nothing related to hemolytic anemia. Oh well.
Scott, you know how I feel about you too. don't doubt that. No matter what. Just don't feel anything has changed when I don't defend everything you do, ok? My affection did not stop and it is because I care that I try to nudge you a bit, don't want to see another underscore added to your moniker. You can email me anytime. I hope your wife is feeling better.
I hear you about the criteria needed to make the group separation, I think it should be done by the anemia effect on the person's body and not a chosen number or maybe a combo of both. Since the MCV changes at some point during tx in many of us, it makes you wonder if the deformity of cells gets resolved in all of us, or it might linger in some. Mine went high for months and did go down post tx, I kept reading the net to see how significant this was and nothing related to hemolytic anemia. Oh well.
Scott, you know how I feel about you too. don't doubt that. No matter what. Just don't feel anything has changed when I don't defend everything you do, ok? My affection did not stop and it is because I care that I try to nudge you a bit, don't want to see another underscore added to your moniker. You can email me anytime. I hope your wife is feeling better.
Apropos skin problems.
The skin on my face before tx...like milk and honey, not a blemish (well maybe one or 2 little spider veins on the cheek), and I didn't have to work hard for it to remain that way.
No skin problems the first year, but surfacing during the second year on tx.
What happend 3 month post tx...I better not describe, some here have a sensitive stomach.
I am left with a face full of spider veins, which will be lasered shorly after X-mas.
I am talking about my face only. I had the body rashes and itching just like everybody else.
Ina
The skin on my face before tx...like milk and honey, not a blemish (well maybe one or 2 little spider veins on the cheek), and I didn't have to work hard for it to remain that way.
No skin problems the first year, but surfacing during the second year on tx.
What happend 3 month post tx...I better not describe, some here have a sensitive stomach.
I am left with a face full of spider veins, which will be lasered shorly after X-mas.
I am talking about my face only. I had the body rashes and itching just like everybody else.
Ina
Thanks Scott.
I know you are between a rock and a hard place, and don't have many, if any members that share your situation.
If memory serves me correct, you never go a clear cut answer about your AIH. A lot of AIH starts out shortly after the beginnng of tx, and occasionaly post tx. Have you consulted with other docs?
Why not e-mail Dr.C or Dr.D, or at least question them in their open forum.
This is also one for researcher.
Why do I have that nagging feeling that you have not exausted all your resources.
-----------------------
Hi Ivette,
I totally agree with you. 02 deprivation over time can't be good. The problem is, how do we measure this, since different people have a different tolerance to low HGB.
Some here are gasping for air at HGB 12, and others are chucking along at 8.
By the time they study sides, if ever, you and I will be in our eighties.
My thyroid went hypo (Hashimoto) in 1993. I stayed for 13 years on the same dosage, which is called..well controlled.
I made it without incident through the first year on tx, but had to keep raising my Synthroid during the second year, as my TSH kept going higher and higher. I made a total of 5 adjustments on tx, and another 5 off tx, as the TSH kept going down
I have T4 and TSH done every 2 month.
I think DD had a difficult time adjusting, or was it mikesimon. One of them needed 2 years to get their thyroid under control.
Ina
I know you are between a rock and a hard place, and don't have many, if any members that share your situation.
If memory serves me correct, you never go a clear cut answer about your AIH. A lot of AIH starts out shortly after the beginnng of tx, and occasionaly post tx. Have you consulted with other docs?
Why not e-mail Dr.C or Dr.D, or at least question them in their open forum.
This is also one for researcher.
Why do I have that nagging feeling that you have not exausted all your resources.
-----------------------
Hi Ivette,
I totally agree with you. 02 deprivation over time can't be good. The problem is, how do we measure this, since different people have a different tolerance to low HGB.
Some here are gasping for air at HGB 12, and others are chucking along at 8.
By the time they study sides, if ever, you and I will be in our eighties.
My thyroid went hypo (Hashimoto) in 1993. I stayed for 13 years on the same dosage, which is called..well controlled.
I made it without incident through the first year on tx, but had to keep raising my Synthroid during the second year, as my TSH kept going higher and higher. I made a total of 5 adjustments on tx, and another 5 off tx, as the TSH kept going down
I have T4 and TSH done every 2 month.
I think DD had a difficult time adjusting, or was it mikesimon. One of them needed 2 years to get their thyroid under control.
Ina
Ina girl, I can't remember (what a surprise), but you did not have the skin problems before your first tx either?
one thing I would like to see, in the post tx era, is the effect the untreated anemia has on people. I know the equation shows that if tx causes anemia, then tx equals effect caused by anemia, so the effect is caused by tx technically. But, instead of lumping everyone together, separate in group treated with rescue drug and where anemia stabilized, group allowed to suffer for months with anemia, and tx group not anemic; I would like to see if minimizing the effect of hypoxia makes a difference in the long term effects or its severity. I can not believe that depriving all the major organs of the full dose of oxygen needed to function, does not result in added problems. Since hemodialysis patients are given procrit to counteract their anemia, I wonder why the need is felt to address it in them, but not in all the anemic folks of hcv tx.
Still, I find it comforting that most won't suffer severe long term effects after tx. If we believe the informal survey results. I still wonder about hypoxia...
It seems that no matter what the cause is, the effect of anemia is the same on the body
http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/index.htm
and the treatment is basically the same as for hcv tx caused anemia.
This should be addressed soon, since anemia is treatable in most cases, and if that means less folks recovering forever, it would be such a disservice to allow it to continue.
So, technically the effects of anemia are traced to tx, but they need not linger and cause more problems. The potential risk of epoetin can be monitored with frequent blood work.
Ina, when did your thyroid failed? I think you said after first tx?
take care
one thing I would like to see, in the post tx era, is the effect the untreated anemia has on people. I know the equation shows that if tx causes anemia, then tx equals effect caused by anemia, so the effect is caused by tx technically. But, instead of lumping everyone together, separate in group treated with rescue drug and where anemia stabilized, group allowed to suffer for months with anemia, and tx group not anemic; I would like to see if minimizing the effect of hypoxia makes a difference in the long term effects or its severity. I can not believe that depriving all the major organs of the full dose of oxygen needed to function, does not result in added problems. Since hemodialysis patients are given procrit to counteract their anemia, I wonder why the need is felt to address it in them, but not in all the anemic folks of hcv tx.
Still, I find it comforting that most won't suffer severe long term effects after tx. If we believe the informal survey results. I still wonder about hypoxia...
It seems that no matter what the cause is, the effect of anemia is the same on the body
http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/index.htm
and the treatment is basically the same as for hcv tx caused anemia.
This should be addressed soon, since anemia is treatable in most cases, and if that means less folks recovering forever, it would be such a disservice to allow it to continue.
So, technically the effects of anemia are traced to tx, but they need not linger and cause more problems. The potential risk of epoetin can be monitored with frequent blood work.
Ina, when did your thyroid failed? I think you said after first tx?
take care
There actually have been some mono Riba studies. Riba seems to halt fibrosis progression in some that can't tolerate combo.
That may be something to ask your doc about, down the road, if newer drugs don't pan out for you.
Riba is the fire that keeps Interferon sides burning, but given mono, the sides are very tolerable, so is the anemia.
The bone marrow will work harder to produce RBC's , trying to make up for the hemolysis that riba causes...that is, if Interferon isn't around to keep it down.
Nasty thing this AIH. I heard about 2 people here in town who both got it about 3-4 month into tx, and one almost died.
Of course they were both janked off tx, got heavy doses of steroids, AND....became both SVR's.
Talk about some lucky dogs.
Actually this came from the horses mouth, my doctor here in town, they were his patients.
He was a schmuck doc though, and I left him during tx, but he did get those 2 through.
Ina
That may be something to ask your doc about, down the road, if newer drugs don't pan out for you.
Riba is the fire that keeps Interferon sides burning, but given mono, the sides are very tolerable, so is the anemia.
The bone marrow will work harder to produce RBC's , trying to make up for the hemolysis that riba causes...that is, if Interferon isn't around to keep it down.
Nasty thing this AIH. I heard about 2 people here in town who both got it about 3-4 month into tx, and one almost died.
Of course they were both janked off tx, got heavy doses of steroids, AND....became both SVR's.
Talk about some lucky dogs.
Actually this came from the horses mouth, my doctor here in town, they were his patients.
He was a schmuck doc though, and I left him during tx, but he did get those 2 through.
Ina
You said:
That isn't true, I just thought my post covered your query. I neglected to put your name in the box, sorry. It was 4 am at the time. I didn't intend to "ignore" you.
Ok, I accept that.
You said:
It seems highly likely a metabolic component is at work here, that possibly the tx disrupts our hormonal balance or the virus being eliminated.
Tx disrupts our hormonal balance, absolutely, from thyroid issues, to menstrual, and adrenal problems, as well as diabetes.
So tx = hormonal disruptions = which cause side effects and
illness = which was caused by tx.
I see no contradiction.
I don't believe that elimination of the virus plays a role here.
But lets say for arguments sake it does:
Tx eliminated the virus = that causes side effects = so tx was the cause here too.
Members here assign Riba all kinds of sides, everything from Riba rage, Riba rashes, or being the lone culprit of anemia.
No idea were this comes from.
Give a patient mono Riba, and all they expirience "some" anemia.
Interferon suppresses the production of RBC's in the marrow, and Riba breaks the ones that are in circulation up, shortening their life span.
Riba may be carcinogenic in humans, but that has not been proven yet.
The medication inserts lump Riba and Interferon together. Even though the insert may have just have the word Riba written on it, it's the combo that is discussed.
Riba enhances many sides of Interferon, that is obvious when comparing the side effect profile of those that took mono Interferon, and those that took in conjunction with Riba.
I have not read anything anywhere (but that doesn't mean it's not out there) about Riba causing long lasting effects.
My only concern are the possible carcinogenic effects in the long run.
The culprit remains Interferon.
Did you know that there are topical Interferons used in certain dermatological conditions, and patients started complaining about flu like symptoms?
People want to get rid of Riba in future tx, I say get rid of Interferon. That is truly wishful thinking, it will be with us for a looong time.
I have some stuff to take care of, so I am not able to respond for a number of days. But if you write, I will see it, and catch you some other time.
Ina
That isn't true, I just thought my post covered your query. I neglected to put your name in the box, sorry. It was 4 am at the time. I didn't intend to "ignore" you.
Ok, I accept that.
You said:
It seems highly likely a metabolic component is at work here, that possibly the tx disrupts our hormonal balance or the virus being eliminated.
Tx disrupts our hormonal balance, absolutely, from thyroid issues, to menstrual, and adrenal problems, as well as diabetes.
So tx = hormonal disruptions = which cause side effects and
illness = which was caused by tx.
I see no contradiction.
I don't believe that elimination of the virus plays a role here.
But lets say for arguments sake it does:
Tx eliminated the virus = that causes side effects = so tx was the cause here too.
Members here assign Riba all kinds of sides, everything from Riba rage, Riba rashes, or being the lone culprit of anemia.
No idea were this comes from.
Give a patient mono Riba, and all they expirience "some" anemia.
Interferon suppresses the production of RBC's in the marrow, and Riba breaks the ones that are in circulation up, shortening their life span.
Riba may be carcinogenic in humans, but that has not been proven yet.
The medication inserts lump Riba and Interferon together. Even though the insert may have just have the word Riba written on it, it's the combo that is discussed.
Riba enhances many sides of Interferon, that is obvious when comparing the side effect profile of those that took mono Interferon, and those that took in conjunction with Riba.
I have not read anything anywhere (but that doesn't mean it's not out there) about Riba causing long lasting effects.
My only concern are the possible carcinogenic effects in the long run.
The culprit remains Interferon.
Did you know that there are topical Interferons used in certain dermatological conditions, and patients started complaining about flu like symptoms?
People want to get rid of Riba in future tx, I say get rid of Interferon. That is truly wishful thinking, it will be with us for a looong time.
I have some stuff to take care of, so I am not able to respond for a number of days. But if you write, I will see it, and catch you some other time.
Ina
That isn't true, I just thought my post covered your query. I neglected to put your name in the box, sorry. It was 4 am at the time. I didn't intend to "ignore" you.
It is not a case of me not believing anyone like DD states, it is not that I feel anyone is "imagining" these problems as DD so rudely states. Absolutely not, I dont discount these issues at all, I just think a lot more study is required before we have the answer for the obvious reason: there are too many variables! It seems highly likely a metabolic component is at work here, that possibly the tx disrupts our hormonal balance or the virus being eliminated upsets the apple cart? Why is it Riba is totally ignored as a causal agent in the equation? There are just too many known and unknown factors to consider to be drawing conclusions. The best that can be done in the meantime is to deal with the issues individually and try to help the patient have some relief. Telling people "interferon causes long term sides" is not true, it is a supposition, it MIGHT be the cause and then again it might not be.
Correlation does not constitute causation!! It isn't like I am making this stuff up here, you can't just create a theory out of thin air or because a lot of people think it is so. A lot of people thought the Earth was flat too.
Pinning the issues on Interferon and concluding it is the cause in spite of all the variables just doesn't make logical sense to me.
It is not a case of me not believing anyone like DD states, it is not that I feel anyone is "imagining" these problems as DD so rudely states. Absolutely not, I dont discount these issues at all, I just think a lot more study is required before we have the answer for the obvious reason: there are too many variables! It seems highly likely a metabolic component is at work here, that possibly the tx disrupts our hormonal balance or the virus being eliminated upsets the apple cart? Why is it Riba is totally ignored as a causal agent in the equation? There are just too many known and unknown factors to consider to be drawing conclusions. The best that can be done in the meantime is to deal with the issues individually and try to help the patient have some relief. Telling people "interferon causes long term sides" is not true, it is a supposition, it MIGHT be the cause and then again it might not be.
Correlation does not constitute causation!! It isn't like I am making this stuff up here, you can't just create a theory out of thin air or because a lot of people think it is so. A lot of people thought the Earth was flat too.
Pinning the issues on Interferon and concluding it is the cause in spite of all the variables just doesn't make logical sense to me.
Peddle your sh!t somewhere else, and stay out of my way jerk.
I have seen you post the same post now 3 times.
Ina
I have seen you post the same post now 3 times.
Ina
You again mischaracterize my point which is: we do not know the cause of these "long term" issues people are having. My point now and always has been that there are TOO MANY VARIABLES to draw the conclusion you do. That is not to say it isn't happening to people, but to say the cause is yet to be determined. Studies need to be done before you can make the correlation between Interferon and these issues. It very well could be a number of influences that are also part of the equation or caused by something else,long term Riba use for one, we dont know yet.
You seem to think stating your opinion emphatically and repeatedly somehow makes it fact. Again, correlation does not constitute causation. The variables have to be isolated before conclusions can be drawn. It could be brain fog is caused by interferon use but the rashes are caused by hormonal changes or some other combo of influences from the treatment, we just DONT KNOW YET.
riba causes rashes and mouth sores while people are on tx, who's to say it isn't responsible for these post tx skin and mouth problems? Who's to say the hormonal changes caused by the drugs or removing the virus doesn't have an impact? Those are just a few of the possibilities and there are many more to consider before we can conclusively say Interferon causes these problems.
You can't ignore all the variables just because you have decided you "know" the cause. You simply ignore "long term Riba use" as a factor even though it is taken in conjunction with Interferon! What about the influence of "rescue" drugs? I can't see how you can totally ignore all these variables and pin the blame on Interferon. No one knows the cause or causes of this phenomenon yet.
You seem to think stating your opinion emphatically and repeatedly somehow makes it fact. Again, correlation does not constitute causation. The variables have to be isolated before conclusions can be drawn. It could be brain fog is caused by interferon use but the rashes are caused by hormonal changes or some other combo of influences from the treatment, we just DONT KNOW YET.
riba causes rashes and mouth sores while people are on tx, who's to say it isn't responsible for these post tx skin and mouth problems? Who's to say the hormonal changes caused by the drugs or removing the virus doesn't have an impact? Those are just a few of the possibilities and there are many more to consider before we can conclusively say Interferon causes these problems.
You can't ignore all the variables just because you have decided you "know" the cause. You simply ignore "long term Riba use" as a factor even though it is taken in conjunction with Interferon! What about the influence of "rescue" drugs? I can't see how you can totally ignore all these variables and pin the blame on Interferon. No one knows the cause or causes of this phenomenon yet.
Just because it walks like a duck, squacks like a duck, doesn't mean it is a duck.
You first have to do scientific research and prove to me that the sun was not shining in your eyes when you thought that the same duck that just walked past you, was the same one that quacked, and therefore may not really be a duck, but a fragment of you imagination, and in reality only resembles something that looks like a duck...
Ina
You first have to do scientific research and prove to me that the sun was not shining in your eyes when you thought that the same duck that just walked past you, was the same one that quacked, and therefore may not really be a duck, but a fragment of you imagination, and in reality only resembles something that looks like a duck...
Ina
First of all, not all Cancer patients do massively greater amounts of interferon. I have an in-law relative who has melanoma and has done similar doses of interferon to what some of us have done, and also has not done other cancer drugs, aside from the interferon. I think you are making assumptions that are not necessarily true. Also, even those on higher doses, if they exhibit the same after-effects, must obviously demonstrate a connection in after-effect symptomatology. It seems obvious to most everyone else.
As far as assigning the symptoms to residual virus, that flies in the face of logic! If the high levels of active, aggressive HCV, before SVR was not causing the symptoms, then surely, the minute, residual crippled virus remaining (or supposedly remaining) would not be responsible for launching this barrage of symptoms. No, in many cases the symptoms are generated during interferon treatment, and often persist, and/or intensify after finishing treatment. Why does this logical conclusion that many are seeing and experiencing seem to escape you. You have not even gotten to that point yet yourself in treatment, yet you question the veracity of every bit of supporting data that is pointed out to you. I begin to think you have a deep seated fear of possible after-effects, or are trying desperately to protect and superimpose your own personal opinion. Why else would one try so hard to constantly contradict what many of our members are experiencing and saying. Many doctors are also beginning to acknowledge the existence of serious chronic post interferon consequences. Have you seen how many people are being treated for neuropathy, arthritic problems, rashes, mouth sores, fatigue after ending therapy.
I really don't get why you have to constantly disavow what other people fully recognize. When you remove one variable, and certain patterns take place in large numbers of people, the logical thing is to assume that it has something to do with the variable in question. You seem to be looking all over the place for some 'other' smoking gun. Again, you ignore other information, or discount it, using your own logic (like the post-interferon Cancer boards, etc)and lock-in to your position as if you do not really want to know the truth.
You might be better off doing a little listening and observing, and finding some real answers based on 'other peoples' experiences and wisdom, rather than superimposing your own answers. I think it comes across as very disrespectful and self-obsessed.
DD
As far as assigning the symptoms to residual virus, that flies in the face of logic! If the high levels of active, aggressive HCV, before SVR was not causing the symptoms, then surely, the minute, residual crippled virus remaining (or supposedly remaining) would not be responsible for launching this barrage of symptoms. No, in many cases the symptoms are generated during interferon treatment, and often persist, and/or intensify after finishing treatment. Why does this logical conclusion that many are seeing and experiencing seem to escape you. You have not even gotten to that point yet yourself in treatment, yet you question the veracity of every bit of supporting data that is pointed out to you. I begin to think you have a deep seated fear of possible after-effects, or are trying desperately to protect and superimpose your own personal opinion. Why else would one try so hard to constantly contradict what many of our members are experiencing and saying. Many doctors are also beginning to acknowledge the existence of serious chronic post interferon consequences. Have you seen how many people are being treated for neuropathy, arthritic problems, rashes, mouth sores, fatigue after ending therapy.
I really don't get why you have to constantly disavow what other people fully recognize. When you remove one variable, and certain patterns take place in large numbers of people, the logical thing is to assume that it has something to do with the variable in question. You seem to be looking all over the place for some 'other' smoking gun. Again, you ignore other information, or discount it, using your own logic (like the post-interferon Cancer boards, etc)and lock-in to your position as if you do not really want to know the truth.
You might be better off doing a little listening and observing, and finding some real answers based on 'other peoples' experiences and wisdom, rather than superimposing your own answers. I think it comes across as very disrespectful and self-obsessed.
DD
In the worst of case:
For arguments sake, lets assume I had occult Hcv over and above the chronic active HCV before tx. I tx, and am SVR, but are left with occult and residual virus.
I am left with:
Rosaccea (improved considerably)
Seborrheic drematitis (just beginning to improve)
trench mouth (finally getting better)
low body temp 96.3 (freezing all the time)
food allergies (gluten, no diagnosis of Celiac)
Sjorgens syndrome (at it's worst)
no libido
fatigue
great difficulty sleeping
braindead (no need to go into the long list I hope)not getting better
difficulty getting thyroid under control (improving finally)
depression (now mild)
body pains of different intensity, coming an going, migrating all over.
I didn't have any of this before tx, while living with chronic/active HCV, and for arguments sake occult virus.
For arguments sake, I am left with residual/trash and occult virus, but not active HCV, so my burden is a lot lighter.
Can you explain my symtoms?
None of them qualify for the "old age" saga.
I lived 57 damn long years without any "side effects". In my book this is tx related, scientific studies not withstanding.
This was only the worst case description, I have no clue if I have residual/occult virus. Under the worst case scenario, can you please give me a hypothetical why I feel the way I do.
DD said it in one sentence:
As far as assigning the symptoms to residual virus, that flies in the face of logic! If the high levels of active, aggressive HCV, before SVR was not causing the symptoms, then surely, the minute, residual crippled virus remaining (or supposedly remaining) would not be responsible for launching this barrage of symptoms.
Just thought I add occult to that, and make it a long winded post.
Ina
Your nasty, personal responses have no place in a forum. People do that when they can't attack the argument so they attack the person instead. You seem to think you can draw these conclusions and constantly reiterate them and that will replace the research necessary to confirm your conclusions.
There is a lot of science showing the benefits of Interferon, little to none showing these "after effects" are caused by Interferon. They could be caused by Riba, all patients take Riba along with Interferon so how is it you can magically ignore the Riba and place the blame on Interferon? You ignore the Riba because it doesn't fit your theory, but it is there and can not be ignored when making an analysis. The point is, I dont think you can draw these conclusions yet based on any more than hunches. I also think the actions of the virus itself or the elimination of the virus( and therefore a change in us metabolically) could be a factor along with other factors not yet examined. You nor anyone know what the possible effects any "persitent" or "low level infection" of the virus has or does not have on us yet.
Your relative not withstanding, the normal dosages of Interferon we take are far less than the average cancer patient. In addition cancer patients take a myriad of other drugs in their chemo cocktail that we do not.
The virus itself effects metabolic changes in our bodies and when it is eliminated we are metabolically altered. This fact alone could explain some of the phenomenon. Just looking at the effect on viral suppression of cholesterol levels or viral influence on hormones shows us there is more going on than meets the eye. My suspicion is hormonal changes caused by eliminating the virus play a big part in these post ptoblems. These and many other issues need to be examined before conclusions can be drawn. This is not to say the experiences are any less difficult to cope with but only that we do not have all the facts so can not draw these conclusions without further analysis. We certainly cant conclusively say "it's Interferon" when patients ALSO take large doses of Riba, a drug very little is known about it's role in fighting the virus or its role in post tx problems. They still are not sure why it works in conjunction with IFN to eliminate the virus. Through all these unknowns, you are able to draw a straight line to Interferon? I don't see how. It is akin to guessing more than it is to solid answers.
By the way, YOU added my name to your heading, which is why I posted.
There is a lot of science showing the benefits of Interferon, little to none showing these "after effects" are caused by Interferon. They could be caused by Riba, all patients take Riba along with Interferon so how is it you can magically ignore the Riba and place the blame on Interferon? You ignore the Riba because it doesn't fit your theory, but it is there and can not be ignored when making an analysis. The point is, I dont think you can draw these conclusions yet based on any more than hunches. I also think the actions of the virus itself or the elimination of the virus( and therefore a change in us metabolically) could be a factor along with other factors not yet examined. You nor anyone know what the possible effects any "persitent" or "low level infection" of the virus has or does not have on us yet.
Your relative not withstanding, the normal dosages of Interferon we take are far less than the average cancer patient. In addition cancer patients take a myriad of other drugs in their chemo cocktail that we do not.
The virus itself effects metabolic changes in our bodies and when it is eliminated we are metabolically altered. This fact alone could explain some of the phenomenon. Just looking at the effect on viral suppression of cholesterol levels or viral influence on hormones shows us there is more going on than meets the eye. My suspicion is hormonal changes caused by eliminating the virus play a big part in these post ptoblems. These and many other issues need to be examined before conclusions can be drawn. This is not to say the experiences are any less difficult to cope with but only that we do not have all the facts so can not draw these conclusions without further analysis. We certainly cant conclusively say "it's Interferon" when patients ALSO take large doses of Riba, a drug very little is known about it's role in fighting the virus or its role in post tx problems. They still are not sure why it works in conjunction with IFN to eliminate the virus. Through all these unknowns, you are able to draw a straight line to Interferon? I don't see how. It is akin to guessing more than it is to solid answers.
By the way, YOU added my name to your heading, which is why I posted.
Also, would you care to reply to Eisbein's well put comments about her after-effects, and where they came from? I think you would find many of us with the same laundry list of unexplained symptoms occuring RIGHT AFTER interferon therapy. Re-read all the forum threads on this subject, by many different members, and the picture will crystalize.
No, I am not attacking you, but the way that you contradict what others have experienced. YOU are the one drawing unfounded conclusions...and you state that time and time again...my suspicions are that....I think that...etc. You have zero scientific proof behind your assertions, yet you keep attacking the credibility of the many forum members who have, first hand, experienced the after effects of these drugs...many of them known after-effects, and many even stated in the interferon literature packages...yet you continue to claim that everyone else is mistaken, even our doctors, and that it must be something else causing the problems.
Where is your logic? Where is your personal experience on this issue? Where are your supporting scientific studies?
The doctors I have met with over the past two years are well aware of the tremendous problems that interferon is CAPABLE of causing in SOME people long term after a course of therapy. You ignore those comments entirely.
Bottom line, as far as interferon after effects, to sum it up in a very unscientific way: If it walks like a duck, and quacks like a duck...then most likely it is a duck!
We are not claiming to have run big research studies to prove what is happening, but why the heck do you think we are discussing this issue on the forum, as are many hundreds of others around the world, on various forums? Because it is happening, and we recognize the problem for what it is, and we need to find a way to mitigate the problems.
For you to keep implying that we are all imagining things, and are faulty in our logic, is insulting and disrespectful. I think you use a subtle form of 'personal attack' as you put it, in your responses to our post-tx observations on the forum.
I don't mind you thinking that the problems do not come from the interferon, just don't claim that your opinions are the truth, or that you have some special access to the real answers. It is very presumptious of you, and only indicates a rigidity in your thinking. When you dig yourself into a hole, it is sometimes hard to get out of it. I am very open to finding out the real answers....show me how the interferon is NOT causing any of these problems. Let me see your scientific studies showing that long term problems are definitely NOT a result of the drugs, but some other specific variable.
For most of us, as Eisbein stated clearly above, when it walks like a duck......
DD
Where is your logic? Where is your personal experience on this issue? Where are your supporting scientific studies?
The doctors I have met with over the past two years are well aware of the tremendous problems that interferon is CAPABLE of causing in SOME people long term after a course of therapy. You ignore those comments entirely.
Bottom line, as far as interferon after effects, to sum it up in a very unscientific way: If it walks like a duck, and quacks like a duck...then most likely it is a duck!
We are not claiming to have run big research studies to prove what is happening, but why the heck do you think we are discussing this issue on the forum, as are many hundreds of others around the world, on various forums? Because it is happening, and we recognize the problem for what it is, and we need to find a way to mitigate the problems.
For you to keep implying that we are all imagining things, and are faulty in our logic, is insulting and disrespectful. I think you use a subtle form of 'personal attack' as you put it, in your responses to our post-tx observations on the forum.
I don't mind you thinking that the problems do not come from the interferon, just don't claim that your opinions are the truth, or that you have some special access to the real answers. It is very presumptious of you, and only indicates a rigidity in your thinking. When you dig yourself into a hole, it is sometimes hard to get out of it. I am very open to finding out the real answers....show me how the interferon is NOT causing any of these problems. Let me see your scientific studies showing that long term problems are definitely NOT a result of the drugs, but some other specific variable.
For most of us, as Eisbein stated clearly above, when it walks like a duck......
DD
The cancer victims take 3-5 times the amount of interferon Hep C patients do and in addition take a myriad of other drugs to fight their cancers, drugs we do not take. That has got to have relevance to the situation somehow. Studies need to be done on Hep C patients specifically, the results of cancer patients who took Interferon ( and also took a variety of other drugs to address their cancers) are not synonomous with Hep C patients. We do not take the other drugs involved in breast cancer or melanoma chemotherapy along with interferon. Its a bit of apple and orange mixing I think. We need to have Hep C patient studies done to draw the same conclusions.
With the information about occult and persistent virus becoming more clear, wouldn't we have to consider them as possible agents in some of these "post" or lingering side effect situations rather than Interferon or combo therapy? I think the info ( like the Carreno paper) makes it even more difficult to say what the cause of long term side effects is and makes it even more clear that we need studies done to determine the real reasons people are having symptoms after they "clear" the virus with treatment.
I think they need to study these outcomes more carefully before we can draw conclusions.
With the information about occult and persistent virus becoming more clear, wouldn't we have to consider them as possible agents in some of these "post" or lingering side effect situations rather than Interferon or combo therapy? I think the info ( like the Carreno paper) makes it even more difficult to say what the cause of long term side effects is and makes it even more clear that we need studies done to determine the real reasons people are having symptoms after they "clear" the virus with treatment.
I think they need to study these outcomes more carefully before we can draw conclusions.
Wow! I read that post and thought this is me now, except with big time migraines. It is interesting to read others tx'ing for other cancers etc. have the same symtoms on interferon and it isnt' just from Hep C. Hopefully they won't all be long term.
I have been reading the forums for Cancer survivors who have been treated specifically with Interferon. Here is a typical post copied from the Cancer Survivor Board:
Subject: Headaches
Screen Name: MelanomablessingslivingDate: 10/7/2005
Msg. #: 3 of 3Cheryl, I am a 6 yr survivor of stage 3 melanoma and took interferon for a year. I still have periodic headaches, not really migraines, but still am chemo brained, easily frustrated, can't multi task and am tired all the time, I have to take sleeping pills to sleep but I do sleep yet I am tired, exhausted, still light and noise sensitive and have very achy joints; feels like it catapulted me 10 years into the future with age related systems now. Sorry I don't know more about your severe migrains, but you are not along in residuel systems. Some people can work right thru their chemo not me and not now. Have short bursts of energy but don't know where that girl is I used to know; I am still looking for her................know what I mean? I let Jesus be in control because I now have anxiety attacks and am currently in counseling just coping from day to day and go every 6mos to derm and every 6mos to oncol. and monthly blood work. I am living with the diagnosis but have turned it in to surviving and well as living and life is still very good. Praying God will give you direction re your headaches, you might try www.cancercenter.com and go to melanoma chemotherapy symtoms or talk to a Oncology Information Specialist at 888.816.5122. God Speed. Sheila
My comment:
I think it may be helpful to our understanding of Post-Tx interferon induced symptoms for us to look closely at what other treaters experience after a course of Interferon. I am seeming to find very similar comments being made by the Cancer survivors, as many of our Forum members have made. Now I will look for forums relating to other diseases, like MS, etc. that are often treated with interferon. I think, bottom line, the drugs often are capable of, and in many cases, do produce some nasty, long term problems for those that have used them.
DoubleDose
Subject: Headaches
Screen Name: MelanomablessingslivingDate: 10/7/2005
Msg. #: 3 of 3Cheryl, I am a 6 yr survivor of stage 3 melanoma and took interferon for a year. I still have periodic headaches, not really migraines, but still am chemo brained, easily frustrated, can't multi task and am tired all the time, I have to take sleeping pills to sleep but I do sleep yet I am tired, exhausted, still light and noise sensitive and have very achy joints; feels like it catapulted me 10 years into the future with age related systems now. Sorry I don't know more about your severe migrains, but you are not along in residuel systems. Some people can work right thru their chemo not me and not now. Have short bursts of energy but don't know where that girl is I used to know; I am still looking for her................know what I mean? I let Jesus be in control because I now have anxiety attacks and am currently in counseling just coping from day to day and go every 6mos to derm and every 6mos to oncol. and monthly blood work. I am living with the diagnosis but have turned it in to surviving and well as living and life is still very good. Praying God will give you direction re your headaches, you might try www.cancercenter.com and go to melanoma chemotherapy symtoms or talk to a Oncology Information Specialist at 888.816.5122. God Speed. Sheila
My comment:
I think it may be helpful to our understanding of Post-Tx interferon induced symptoms for us to look closely at what other treaters experience after a course of Interferon. I am seeming to find very similar comments being made by the Cancer survivors, as many of our Forum members have made. Now I will look for forums relating to other diseases, like MS, etc. that are often treated with interferon. I think, bottom line, the drugs often are capable of, and in many cases, do produce some nasty, long term problems for those that have used them.
DoubleDose
I am soooooooo sorry I haven't emailed you. I promise to do it today. I think about you often, however.
Hey I haven't seen anything of The Beagle lately. Is he okay?
I know he relapsed and I was soooo disappointed for him.
Hey I haven't seen anything of The Beagle lately. Is he okay?
I know he relapsed and I was soooo disappointed for him.
I am treating with prednisone. I searched thru sx's from prednisone and they are so generic. Now that I know it can affect sleep I can use that as leverage with my GP. I see her on Dec 8 and I'll ask about it.
The side effect from the prednisone that bothers me the most is that it has been shown to re-trigger HCV in some patients that are SVR. We'll find out in March.
The side effect from the prednisone that bothers me the most is that it has been shown to re-trigger HCV in some patients that are SVR. We'll find out in March.
good to see your post,but sorry for continued sx's....on the plus side: you haven't relapsed?.....you are working 2 jobs...and your p*ssed off!!!!...i love your spirit mrs o..please keep us posted..i hope your sx's fade away along w/ anger over health issues,but never lose that spirit-BRAVO
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